Since you have read Parts I and II, I hope you feel better equipped and prepared for your NICU stay. Whether you are in the NICU for 4 days or 4 months there is a moment you have waited for, longed for and prepared for: discharge. Part III will cover some topics that apply to both inside and outside of the NICU.

GUIDE TO CALGARY’S NICUS: PART III

Advocating for your child

What happens after discharge?

Resources

Advocating for your child

When you land in the NICU you will likely be overwhelmed, having just given birth and now entering this stress-filled and unfamiliar environment. But after a few hours, days or weeks, you start to settle in, learn the lingo and then realize that you have an opinion on what happens to and for your child. Everyone wants what is best, healthiest and safest for your child, that is obvious. But just like the rest of parenthood, that approach can look very different depending on who is the decision maker in the situation. It can be difficult to voice your opinion when you feel like it is insignificant compared to the years of education present in the room. So I’ve asked several parents of NICU babes what their advice is when you struggle to find your voice.

[We] asked a lot of questions. I kept a journal of day to day plans and what worked well and didn’t work well. Be a part of the team so when/if you are faced with this you feel comfortable discussing. We found that everyone was always open and willing to talk with us. Primary nurses were a big part of our NICU journey. We had them in both hospitals and I felt more at ease knowing there was a couple nurses who really knew our son. We also used a whiteboard in our room that gave an overview of the care, unique things to our son, therapies, etc. I often called just after shift change to check in with the new nurse and made sure they knew some key things. Making sure things were in the chart was also beneficial. Keeping open communication helped immensely.

Attending rounds each and every morning played such a huge role in getting to know our team and also helped us to learn all the information about our son to know what is going on. We became part of the medical team. Having support from other parents who were going through the same or had gone through it were helpful as well. The medical team also helped us feel empowered by taking what we had to say into consideration, encouraging us to speak up and reminding us that as the parents we do know our child best. They always let us contribute to the plans and medical decisions.

[My advice for parents would be] don’t be afraid to ask questions. If you need to ask the same question numerous times, that is perfectly ok. You are a part of the team and your opinions matter. You ultimately know your child best so speak up.

— Pamela T, mother to Sawyer (1474g), 30 weeker

The NICU is an exhausting and overwhelming place, and it can be challenging to understand what the choices are for your child and to make decisions. Ask questions, ask to speak with certain disciplines after rounds, and find an ally, either in a primary nurse or with a member of your child’s team. Don’t forget that your family and friends are also your allies. Bring a support for yourself to rounds to bolster you up and to have a second pair of ears and a second brain.

My suggestion for advocating for your child is to be part of rounds. There are so many benefits to this. I became the expert on my child’s history. This is especially beneficial when you don’t have many primary nurses so your baby has new nurses often. This also allows you to get to know the charge nurse, NPs, NEOs, etc. The whole team values your opinion more when you are an active participant.

— Suja G, mother to Anaya (489g), 23 weeker

Advice for parents in the NICU: trust the excellent care your baby will receive, but be actively involved in that care. Study your baby’s charts, understand the numbers, know the procedures, and know WHY they’re doing what they’re doing. 

— Wendy L, mother to Mason (1162g), 27 weeker

Trust your gut. You may not have attended medical school, or obtained degrees, but you are the only one who is 100% committed to your child. You are your child’s expert. You are the only one present at your child’s bedside every day. You know how they move, how they breathe, what their needs are. It’s ok for the only reasoning to be “because I know him and that’s what he needs. 

— Me, mother to Theo (515g), 26 weeker

What happens after discharge?

A nurse walks into the room. “So discharge is planned for Sunday!” Wait, what?! For real? Most likely you’ve been waiting and asking on an hourly basis when your baby is going to be coming home. If you’ve had a long NICU stay then you have dreamt of this moment for the last several weeks. You will be all together. In your own space. Without the beeps and boops of alarms. Without someone else deciding your schedule. Where you can cuddle without interruption and feed your baby and yourself simultaneously! Glorious.

Then you walk out of the NICU doors. Feeling both high as a kite and absolutely terrified to now manage this complicated human being all on your own. Chances are you also walked out with a list of upcoming appointments, medications and to-do’s. Family and friends are probably anxiously awaiting your call to come and visit. So let’s start there, how to establish the best transition home.

We found it very helpful to set time for us to get settled as a family before selectively choosing which friends and family to come over. Here is what we posted publicly before discharge:

“SO excited to have Theo possibly coming home this week! I know so many of you want to meet him, and it's been a long time coming. You've all been so supportive and so patient!

It's going to take time for everyone who wants to meet Theo to get to visit. I've heard the first few weeks (or years??) of parenting at home is exhausting. So here's the ground rules for visiting:

1) Preemies are immunocompromised for the 1st year of their life; so if you have a cold, flu or generally bad symptoms or have been around anyone with any of those please help Theo by getting better before you visit.

2) No visitors for the first 2 weeks. After that, by appointment only. It's a weird situation, because it's like adjusting to having a newborn now, even though he's 4 months old. So we need time to establish some routine and just soak up being a family together.

3) After that, visitors must either bring a meal or gloves to clean. We'll be doing 3+ doctor appointments per week in the city for awhile still; so we won't have time to cook or clean for guests. I promise we will eventually get back to hosting our roaring parties again ;)”

Try to save space for yourselves to settle. It’s a huge adjustment. Advocating for your child might mean saying “No” to Great Aunt Jane because you need some more time to feel comfortable before extended relatives visit. Use your doctor as an excuse if you need to, tell them that Dr. Madeup has said it’s best to not have too many people over until baby’s immune system is stronger. Protect yourselves, it’s a precious time and you have earned these uninterrupted snuggles. Surround yourself with the community that will serve your needs, so you can continue to be the best mother/father/caregiver to your child.

The biggest shift post-discharge can be the transition from a set schedule to independence. You might feel lonely, unsure, and sometimes bored. Alternatively you might feel confident, free and social! It’s ok to be in one camp or the other, or flip-flop back and forth depending on the hour! While in the NICU you often had to choose between two good things, “Do I go to the family dinner, or spend time at the NICU?” Now you are able to move (relatively) freely with your baby.

Unfortunately going home doesn’t mean the medical “stuff” stops. You will have follow-up with clinics relevant to your baby. For us, that meant Home Oxygen Clinic, Dietician, Neonatal Follow-up Clinic, Pediatrician, Opthamologist, Audiology, RSV Clinic, Endocrine and Neurosurgery. Public Health will most likely do a home visit within 24 hours of you being home, but you might be educating them about your child instead of them providing useful information as they would for a typical newborn. Depending on the reason for why your child was in the NICU, you may have 2-5 clinic visits/week for the first month, then often spacing to 1-2/week for subsequent months. If your child was very premature (born before 28 weeks) they will be followed by Neonatal Follow-up Clinic until they are 5 years old (several times/year for the first year, then spacing to 1/year). They provide extensive assessments which can help provide access to resources when needed.

Resources (in or out of NICU)

Alberta Children’s Hospital has a program which will set you up with a mentor family who has gone through a NICU Stay (Family to Family Connections). To get connected call or email 403-955-2456 or F2FConnections@albertahealthservices.ca

Connect with the social worker assigned to your NICU before you leave to get resources on any connections in the community that you might not have

Book: “Preemies” by Wechsler Linden, Paroli, and Wechsler Doron. “I found it enormously helpful to look things up when I got home from the NICU. It is written by a neonatologist and parents of preemies, and covers essentially every topic I could think of. A couple sections seemed a little bit dated since the world of neonatology changes rapidly, but overall it was very informative but also positive and reassuring. Some days in the NICU I just felt so overwhelmed by information and people, and the weight of what was happening, that I didn’t ask as many questions as I should, so it was nice to go home and have a reliable book to look things up (instead of reverting to the murky world of misinformation on the internet).” Candace B.

Beads of Courage is a program that provides parents with beads to represent their child’s journey (for example, a bead for extubation, or a surgery, or going off of TPN). ACH is currently a part of this program, but you can also get them shipped to you if you want to do this program independently. Find out about the program here.

FSCD (Family Support for Children with Disabilities) is a government program aiming to provide financial support to families with kids with impending or confirmed diagnoses (up to 2 years before diagnosis). If your child has a high likelihood of disability then you can apply before diagnosis is given. Specific to a NICU stay they can cover parking, milage and food while your child is admitted. Talk to your social worker or apply here.

Neonatal Follow-up Clinic is a good place to access additional resources. They can refer your child to Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (SLP), Psychologists and additional clinics.